How ironic that on the first day I’m finally able to sit down and create our first blog entry we receive some long-awaited good news! After months and months of fighting with our insurance we just found out that the psychologist that will be administering our son’s neuropsych evaluation was able to get our insurance to approve coverage for it. This is a HUGE accomplishment in our eyes. We have been doing everything within our power to get them to cover it and the fact that it has finally gone through is … a relief to say the least. For those of you that have had to go through the process of having a neuropsych eval done, if you had trouble with your insurance covering it (which seems to be a growing issue) you know exactly where we were at until we received that phone call a few minutes ago!
Anyway, it would probably make the most sense to do what I originally intended in this post and give you some background on our son and our situation.
Our son, who is now 6 years and 6 months old, was born after a horribly bad, high-risk pregnancy that was punctuated by a not-so-great birth. Despite being born nearly a month early, he had issues swallowing, sucking, feeding, etc. He also had issue regulating his body temperature. We were allowed to go home after only a few days, but ended up back in the hospital within a couple days because he had a fever. During his stay in the hospital I thought I witnessed what might have been a seizure, but they never caught another one and I never saw another one while we were there. We returned home and I spent the next year trying to feed a child that simply did not want to eat. I pumped full-time for 10 months and he fed from a special Madela feeder. It would take him an hour to eat the bare minimum required to help him maintain his weight. He often gagged while he ate, he labored to breathe, and often threw up what he ate. I had to gently twist the bottle back and forth in his mouth the entire time he ate in order to keep him sucking to any degree. I also had to strip him down and wipe him with cool cloths (at the pediatrician’s suggestion) to keep him awake enough to eat at time. He was labeled poor growth and failure to thrive in the beginning as a result of his almost non-existent weight gain. I remember having to keep him in newborn caps until he was nearly a year old to help him regulate his body temperature.
Ironically, despite his difficulty in terms of feeding, he excelled in every other way in terms of his development. He rolled over early, sat up early, barely crawled before he walked early, and he talked early. He was speaking in short little sentences by the time he was 14 months, which was also around the time he decided he wanted to start potty training. He would actually tap his diaper before he went! We discussed it with his pediatrician and he felt as long as we weren’t actually pushing potty training there was no harm in letting him go on the potty when he wanted. He gradually potty trained and was 100% done (daytime and night) by 2.5. This was despite his little brother being born when he was 2 years and 1 month.
He continued to grown and showed interest in everything. He picked things up quickly and seemed far beyond his peers in terms of his understanding, vocabulary, and coordination. This isn’t just the praise of a parent speaking, even his pediatrician and grandfather (also a pediatrician) were impressed with his development. He could dribble a basketball at under 2 years and began writing letters on his own around 2.5. He knew his alphabet and could count long before he went to preschool. He was always mischievous, but so incredibly bright.
He went into preschool when he was 3. Within a month of going to pre-k we realized he could no longer say his alphabet correct or consistently. We assumed a child sitting nearby or children nearby said it incorrectly and he’s picked up on it. Unfortunately, a fact we didn’t know when we were given a tour or enrolled him, his pre-k teacher was retiring that year and she had very little interest in the class from what we could see. She wasn’t mean, just mildly present.
We tried to re-teach him his alphabet, but found he had an uncharacteristic level of difficulty re-learning it. We eventually purchased Hooked on Phonics so that we could work with him at home on his letters and alphabet. He seemed to have difficulty even naming his letters–a skill he had long-since mastered. The more we worked with him the more alarming his struggle was. He turned 4 over the course of the year and his struggle with utilizing the skills he had and acquiring new ones seemed to grow. He also started assuming some uncharacteristic behaviors such as constant verbal noise or repetitions, extreme frustration, etc. I knew it was time to consider getting him testing. I spoke with his pediatrician and he agreed that what we were seeing was uncharacteristic of my son and recommended we go the route we had already discussed amongst ourselves–seeking out the neurologist that diagnosed one of my younger brothers years ago.
We also called the SPED department in our district and let them know what was going on. Even though he was going to attend private school, we were told it was important to keep them in the loop. I was hesitant, given my professional and personal dealings with school systems as a result of my participation in my younger brother’s schooling as well as my work as an ABA tech and later ABA therapist, but we moved forward and met with them anyway. After going over everything they believed that he should be seen by a private professional as we had informed them we planned to do as they felt they couldn’t fully test him within the district.
We made our appointment with the neurologist my son was to see (as many of you know these get booked really far out) in the fall of 2011 and he was seen in March of 2012. It was determined that he should have an OT eval and neuropsych eval. The OT eval was completed several months ago and he has recently begun OT. They feel that he fits the criteria for Sensory Integration Disorder, which plays a part in what we’re seeing from him. He will also need some feeding/swallow therapy, which will hopefully start in a few weeks (we’re waiting on insurance to approve them as an in-network provider). We have pursued neuropsych evals with 3 providers and it wasn’t until this last one that she was able to get our insurance to approve the testing as “medical” as opposed to “mental health” for a good portion of the tests.
During all of this time, we’ve seen the behaviors we were concerned about grow a bit and we’ve seen some new ones. He had a difficult year in kindergarten, which was due largely in part (in our opinion) to the fact that his teacher had NO handle on his classroom. He attended a private school in which his class was composed of 9 boys and 4 girls. The boys were all rambunctious and many of them probably had little structure at home. The teacher was very nice, but clearly incapable of fully reigning that classroom in on a consistent basis. We also saw a lack of individualization in her teacher manner. While we didn’t expect 1:1 all day long, we were assured that the teacher would be able to adapt to our son’s teacher style to a degree when we met with the school. We were 100% upfront with them on our concerns and they were clearly either disillusional or intentionally misleading us. Regardless, it was a rough year. And ironically, it wasn’t all our son that made it difficult for him. Students were rude or aggressive and the teacher was clearly stressed. It was rough.
We decided over the summer to home school him this year for lack of knowing where he would succeed best. I never wanted him to get so discouraged that he hated school and we began to see that in his last school. Granted the environment was out of control in his classroom (not something he can handle since outside stimuli really bothers him), but how could we risk another bad year?
So here we are. Home schooling, testing, etc. I know we’ve barely broken through the surface in terms of the journey we’re on and I know it will likely be a long and tedious one. In a way we’ve always felt as though we were in the best possible position for a situation like this. Having grown up as the much older sibling of a child with special needs (remaining actively involved until recently) and with my husband having grown up in a family with an aunt that was also special needs, for the most part there was a cautious and open eye on my son from the start. While I think my husband probably struggled a bit with whether or not we really needed to push forward in the beginning, he never dug his heals in and is obviously fully supportive. Now that so much time has gone by I feel as though we’re on the complete same page.
Coordinating testing, services, etc. is exhausting. Paying for some things out of pocket and fighting with insurance to pay the rest is not a game I enjoy playing. All I know is that my son needs the BEST (not just adequate) professionals testing him and providing his services.
What will the long-term picture look like for him? We can only wonder at this point. He looks completely typical and he is very high-functioning, but his daily struggle to take in the world around him and respond completely appropriately poses a struggle for us all. I want what’s best for him. I want him to be as success as possible for him–whatever that looks like. I don’t ever want him to get so frustrated or burnt out that he gives up. So we’ll work hard to make sure we get him the services he needs now so that he has the most opportunities and options in the future.
Why are we creating this blog? I think it’s important for us to chronicle where we’ve been, where we are, and where we’re going. Sometimes it’s hard to see the big picture when you’re in it. Evening writing this now and remembering what he was like as a toddler and seeing the strange and unexpected turn things have taken is still a bit surprising. I look forward to the day where we can look back to this period of time and think–wow, we’ve come so far. I also think it’s important for other parents like us to be able to relate to those going through the same thing.
The song lyrics “If you make it through the night there’s a brighter day…” seem appropriate. We just have to get through this and every other struggle headed our way to ensure the brightest possible future for our son.
I’m a fighter and I will get what my son needs for him. That much I can tell you 😉